My doctor reduced my dose by 25 (after 16 years... - Thyroid UK
My doctor reduced my dose by 25 (after 16 years) without a test. Said taking too much could affect my bone density. On 150, feel unwell
If he didn't do a test then how can he possibly know if you are taking too much?
It is unlikely that you are taking too much if you were feeling well on that dose. You need to be taking a significantly too high a dose so that your T3 goes above range in order for your bone density to be negatively affected. You are more likely to have bone density problems from not getting enough thyroid hormone.
Ask for a thyroid test including T3. If T3 is high then your doctor might be right (but I suspect this is highly unlikely!)
He is meddling with your health and he should not be changing your dose on a whim just because he is scared of your dose. 150mcg is not a high dose, in fact it is quite an average dose. If you GP is concerned ask for a referral to an endocrinologist and also ask for a bone density scan/test etc. If he is that worried about it he should agree to the tests and referral. If he doesn't agree then he clearly isn't concerned enough to justify a reduction in dose.
Sorry to hear you have a doctor so uneducated in thyroid disorders 
Carolyn s
Thank you - that is very helpful - I called for the results of the test which was NORMAL before the reduction!!" So I went back to taking 175mcg without seeing the doctor - I am going to have to go to a different doctor.....I had a terrible xmas - I needed all my energy as it was the first since my father died - and I was so lethargic and couldnt sleep. You are kind to take the time to reply in such detail...
Couldn't agree more with Caroline. I would also ask him to check vitamin D and calcium if he is so concerned - this is much more likely to be a cause of bone problems and is prevalent in thyroid conditions. 175 mcg of thyroxine is not a high hdose anyway and it makes me so angry to hear of yet another GP reducing a dose wit no good reason.
Easy to say but, I would insist......
Arrgh!! We hear this so often!!
Keep a diary of symptoms vs dose vs blood results. Demand that you be tested. Explain in words of only one syllable that you were feeling ok and now you are not!! GRRR! This makes me so cross!
Louise
x
Why did you let him reduce your dose? I am always amazed that people just allow the GP to do as they wish with NO consultation!!
Unfortunately, before we become educated about our own conditions, GPs are very good at scaring us to get their own way. We also expect them know what they are doing, which cannot be further from the truth in some cases! Hopefully the OP is now aware of this and will be able to stand her ground next time 
Sorry, I must be missing the bit where the original poster said there had been "NO consultation"?
If a doctor says to a patient "I think you are on too much xxx which will result in yyy (a BAD thing). So let us reduce your xxx a little bit.", how can an ordinary, unprepared patient resist?
Accepting the reduction the doctor suggests (or recommends) might seem like the only option. Indeed, it might seem like a good idea. So at that point it could be argued that there has been consultation and that the patient has been involved and agrees.
It is only when the reduction of xxx results in deterioration that the patient realises that it was a bad suggestion from the doctor.
A doctor with that patient's interests at heart might have made the suggestion somewhat more sensibly as "Let us try out a reduction in order to avoid yyy. If this causes you a return of symptoms or simply to feel,worse,come back and we can re-visit the issues."
A doctor who more fully understood hypothyroidism might not have reduced the dose at all.
I would most certainly agree with the suggestion that the "consultation" I have suggested above is inadequate and contravenes many guidelines. There was no blood test. It clearly did not sufficiently explain to and involve the patient. It also effectively forced the patient to agree to the one suggestion offered. Then it failed to provide any way of assessing the change either symptomatically or biochemically. So a travesty. But I for one would absolutely never blame the patient in that situation for agreeing. I might lament that they did. I might suggest they go back and argue their corner. But that consultation was like a chess grandmaster playing a demonstration game at a primary school. They don't even have to wake up to win.
Hi, please don't accept this bad medicine from your GP. S/He is wrong in at least 5 areas.
1)
Your GP has a legal duty to have regard to the NHS Constitution and the NHS Constitution states that a doctor MUST discuss your treatment with you.
Then, a doctor has to discuss your treatment with you under GMCs own code of conduct for doctors called Good Medical Practice.
So if a doctor wants to reduce your medication s/he HAS to discuss that with you. Discussion doesn't mean the doctor tells you what he is doing. you have the right to put forward your views and demand proper treatment.
2)
Your doctor also has a legal duty under the NHS Constitution to provide you with information to enable you to make informed decisions about your treatment. If s/he has just reduced your meds without consulting you s/he has not complied with his/her legal duty.
3)
His concern is unfounded. There is a lot of research that shows that low but not suppressed TSH does NOT increase the risk of atrial fibrillation or other heart problems or osteoporosis.
Particularly "Is it safe for patients taking thyroxine to have a low but not suppressed serum TSH concentration? Graham Leese & Robert Flynn University of Dundee, Tayside, UK. Endocrine Abstracts (2010) 21 OC5.6
4)
Even if there were genuine concerns, the way forward is not to make a patient ill but keep the patient well. Monitor bone mineral density by DEXA scans and supplement with appropriate (for you personally) amounts of Vitamins D3 and K2. For heart problems your doctor should carry out a ECG with regard to the P wave maximum and dispersion (Int J Cardiol. 2005 Mar 10;99(1):59-64. Simple electrocardiographic markers for the prediction of paroxysmal atrial fibrillation in hyperthyroidism).
5)
Case law says that a doctors decision must be logical (Bolitho v City and Hackney Health Authority 1997). To just reduce medication without discussion based on an unfounded worry is not logical.
There is no excuse for lazy and bad medicine. Your doctors decision is not logical and you should refer the above 5 points to him/her and complain about his/her poor performance if s/he doesn't make you well.
Nbob that is really helpful, thanks (on behalf of everyone)
I have exactly the same problem with my doctor and nhs endocrinologist . Take no notice I have seen Doctor Skinner and he has increased my thyroxine one month forward and I feel so much better. I have been taking thyroxine for 30 years and the usual blood tests said according to the GP you need to take less absolute rubbish . Dr skinner has gone not just by blood test but by how unwell I have been over the last five years . My doctor will not prescribe me the dosage I need so I shall be getting a private prescription from now on.
I just hope I continue to feel well on increased levothyroxine
Hi
The issue is not t4 or t3 but calcitonin. You only get this from t4 and what it does is control the rate your grow and breakaway. Your bones renew constantly. This is not the same as calcium in the bone. Bone density doesn't measure calcium. Without calcitonin your bones don't renew they just break away causing reduced bone density. This us why t3 only therapy does come with problems. But what it sounds like is your doctor has heard 'thryroid hormone reduces bone density' without understanding that its the effect on calcitonin creation from no or low t4 . Calcitonin can be obtained through a nasal spray. You should note as well that NDT comes with t4, t3, t2, t1 and calcitonin.
Edited by Admin to correct phone auto-correct issue. "MSTAR" should now read "NDT"
Unfortunately the calcitonin in NDT is pig calcitonin which is different from human calcitonin, however having the combination of all the thyroid hormones in NDT does seem to make sense and may well protect against low bone density (although there don't seem to be any studies to support this at the moment). I am doing very well on NDT anyway
Calcitonin CANNOT be obtained as a nasal spray anywhere in Europe (EU).
Calcitonin (Miacalcic): increased risk of cancer with long-term use – all intra-nasal formulations for osteoporosis to be withdrawn
Article date: August 2012
Summary
There is an increased risk of cancer associated with the long-term use of calcitonin. Because of this risk, calcitonin-containing medicines should no longer be used in the treatment of osteoporosis.
All intra-nasal calcitonin sprays, which are the only formulation of calcitonin licensed for osteoporosis, will be withdrawn from the European market.
<more info by following link>
mhra.gov.uk/Safetyinformati...
Also, calcitonin does NOT come from T4.
Rod
Sorry NDT not MSTAR! I'm on my phone!
excellent point deskplant
so patients can inform their doctor that if they are concerned about osteoporosis they should consider NDT as a treatment option.
also i think you are right that it appears that doctors have just heard that thyroxine causes atrial fibrillation and osteoporosis so reduce the dose of LT4.
That is precisely what my Endo told my GP.
Its illogical, wrong, and lazy.
I am sorry you are feeling so bad. It is a great pity that doctor's appear to know nothing about clinical symptoms and that is why we have to take things into our own hands. This is an excerpt from Dr Lowe (I don't have this link):-
With few exceptions, lab thyroid test results are meaningless without the doctor considering the patient's symptoms. When it comes to adjusting a patient's thyroid hormone dosages, using changes in her symptoms is far superior to using thyroid test results. This is clear from the studies of Johansen,[1] Fraser,[2] and our research group. [3][4][5][6][7][8][9][10] And the recently published study by Teitelbaum[11] confirms our study results.
Fraser[2] and our group have concluded that lab thyroid test results are of no value whatever in finding a patient's effective dose. In fact, using thyroid test results to decide on a patient's dose almost guarantees that the patient's treatment won't be effective.
This two excerpts from Dr Lowe and cursor down to the question dated January 25, 2002
1.
I felt generally fine. Also, to my delight, I lost 35lbs over the past year and a half. But that changed in Oct. 2001. In Sept 2001, I went to my general physician. He did my annual TSH test. Because of the result, he lowered my dose to 0.15 mg [150 mcg] Levoxyl daily. About a month later, I started gaining weight despite watching and counting my calories every day, and exercising at least 30 minutes a day. I also became increasing sensitive to cold, which I never had a problem with before. I started taking my temperature at different times of the day for the past few weeks, and no matter when I take my temperature, it has been below or at 97 degrees. I have become more irritable, have no libido, have almost daily headaches, and am starting to experience a small amount of hair loss. I called my doctor and went in for another blood test three weeks ago. He tested my TSH again, and because of the result, he lowered my Levoxyl even lower, to 0.125 mg [125 mcg] per day.
2. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.
an idiot gp, not my normal one, tried that trick on me 3 years ago when i was on 250 levo,
i explained to him for 10 minutes that if my dose was lower and i felt like crap so spent all day lying on my sofa because i was too ill to work or even work i probably would indeed suffer from lose of bone density - however if my dose was high enough to make me feel well i would do things like go to work and go for long walks with my dog (the one with the ears in the picture) known in gp world as weight bearing exercise and therefore be far less lightly to suffer bone density loss
i then changed to armour and t3 which worked much better for me anyway oh and avoid the idiot gp
Suggest to him that you need a DEXA scan as a baseline before he can comment on our bone density. Then you will need another in a year or so to see if there has been any change that cannot be linked to the normal aging process. Good Luck.
Jane
At my one and only appointment (he discharged me on my initial appointment, as he said symptoms and hashimotos were unconnected!!) with an endocrinologist, he said my TSH and t4 levels were out of reference range, which would put me at risk of osteoporosis and fast heartbeat. and to have another blood test in a month. So I did this, and GP talked me into reducing my levo dose, as levels were still out of ref range, albeit only slightly. Within four days of reducing dose, like earlier poster, I was unable to function, lying of sofa, absolutely exhausted. So, I simply self medicated back up to what it had been. When I took my repeat prescription card into GP surgery, I wrote a letter explaining, and he wrote out prescription. Have to have another blood test in New Year, so no doubt will have to go through it all again, if levels are still out. BUT, endo or GP doesn't have to live in my body with my symptoms. Surely if I feel well, that suggests dosage is more or less correct? Happy and healthier 2013 everyone. xx
